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Myositis and Motherhood: We are capable

I have had dermatomyositis, a rare, autoimmune and chronic illness all my life. What’s important, to me, isn’t my limitations. Rather it’s about showing her that those limitations, and her own, don’t get in the way of having a fulfilling, educational, interesting and enriched life.3 min

I have had dermatomyositis, a rare, chronic autoimmune disease all my life. I was told at a very young age I couldn’t have children, and I’d resigned myself to the fact. Then, at 23 and shortly after my marriage, I found out I was pregnant.

Immediately, every physician I knew advised me against it, warning both my child and I wouldn’t make it. Here I am, 11 years later, with a beautiful, boisterous pre-teen. We are fighters.

Her biological father, like many confronted with the realities of a chronically ill and disabled spouse, couldn’t manage the load of parent and partner. After our divorce, I was granted physical custody of our daughter, who was less than a year old at our separation. Since then, he’s had normal visitation while myself and my family, including my current significant other, have raised her. Recently, my ability to parent as a disabled mother has been called into question, both socially and legally.

Because of me, she understands empathy and stands up for others who are classified as “less than,” insisting they deserve equal opportunities. She’s an advocate.

My illness has led to irreversible damage to my body. My joints are fused in calcium deposits, muscles are weakened and skin is easily and frequently irritated. This means invasive treatments, hospital time, and assistive devices like walkers and canes. My parenting had to be adapted to work with these limitations. But it doesn’t mean I’m not a capable, caring, and concerned parent.

My daughter is my first priority, always. There are days when brushing my hair is hard, showering is a chore, and getting around is a battle. However, there is never a day when my daughter’s hair isn’t brushed, she’s not clean and well-fed, where she needs to be, loved and supported. My needs are secondary to hers.

Sometimes, this means my shower gets skipped. Sometimes, we eat frozen pizza instead of a homemade dinner. Sometimes, step-dad or Grandma step in for overnights or transportation. Wait, that sounds just like every parent, right? The old adage “it takes a village to raise a child” didn’t spring forth from disability, but rather reality. It requires love and support and care from many to ensure a child is happy and healthy.

In my life, I’ve frequently been asked if I’m doing what’s best for my daughter: “Don’t you think it’s unfair to her? You being so sick?” “What about playing? You can’t run in the park with her. You can’t be at every sporting event or school play. Don’t you think she deserves that?” “She shouldn’t be burdened by your disability.”

To these naysayers, I have one reply: Yes, it’s unfair that I’m not able-bodied. That doesn’t have to have a negative impact on my child. Rather, it can be an asset in teaching her about the world.

Because my abilities change and shift, she’s learned that together we can adapt to an ever-changing world, and her stability is her support system, not the chaotic outside world.

My parenting had to be adapted to work with these limitations. But it doesn’t mean I’m not a capable, caring, and concerned parent.

Because of me, she understands empathy and stands up for others who are classified as “less than,” insisting they deserve equal opportunities. She’s an advocate.

Because of me, she’s bright, funny, and smart. She’s learned to face obstacles that seem insurmountable with bravery and determination. She’s learned her worth isn’t tied up in how she looks or what she can do, but rather who she is as a person.

Most of all, because of me, she has learned that everyone, especially her, deserves love and support, and that looks different in every family.

To these naysayers, I have one reply: Yes, it’s unfair that I’m not able-bodied. That doesn’t have to have a negative impact on my child. Rather, it can be an asset in teaching her about the world.

We all have challenges to face as parents. Right now, we’re dealing with the realities of puberty and self-esteem. She’s sassy and trying to establish some independence. She likes to sneak extra screen time, extra snacks, and avoid chores. She puts off school for what she sees as important self expression via socializing and art. In short, she’s your average 11-year-old girl.

What’s important, to me, isn’t my limitations. Rather it’s about showing her that those limitations, and her own, don’t get in the way of having a fulfilling, educational, interesting and enriched life.

Isn’t that what all parents are trying to do?

So, I might be in my car or on a bench at the park while she runs and plays. I might have to watch a video of her performance of “Star Wars” on the violin. I might not make it to see every goal or every event. I have to adapt my life to fit hers and accommodate my own limits. However, I will always be supporting her, guiding her, pushing her past limitations…and asking her, again, to go brush her teeth and pick up her shoes.